Friday, March 13, 2009

75 comments:

And my ocd, anal-retentive, whatever you guys call it feels so much better. He looks so nice and clean now. I always thought he looked cute, and now he does without me dying to bathe him. :) He's a sweetie!

Your son is so cute! I know it must be so hard for you, but don't think that him hearing your voice will make him think bad of you since he is pain. He knows you are his mamma and has loved you since you talked to himm in your belly! I see that all the prayers around the world are really working! I will keep praying from Springfield, Mo. :)

absolutely ADORABLE!!! His hair looks GREAT!! His skin is really looking good too!

I am so glad that you guys had a good day!! I have just been so worried about you guys today!

I always feel so much better after I am clean - it washes away all the "ewww and gooo" of these sores (eww and goo being technical terms!). Before I take a shower I feel itchy and stiff and just plain gross. (gross is another technical term! haha!). Hopefully, he will feel better and be more peaceful now that he is clean.

Here is a little something special for everyone. I am monitoring Jonah’s e-mail account jonahawilliams@gmail.com. We received three e-mails yesterday forwarded from Jonah Williams, a different Jonah whose e-mail address is very similar. Instead of being upset this guy recognized they were special, somehow figured out what the correct address was what was going on and forwarded them with a note. “I've been getting a lot of your emails. I'll keep forwarding them to you. Hope everything works out for your son.” My hat is off to Jonah Williams who did a very good deed.

This is my first time commenting, but I've been reading since the day Jonah was born. Your sweet little boy is looking so much better from day to day! I can only pray that he's feeling better and that as each old blister clears up, it stays away. I'm thinking of you three!

Oh how cute....my kids come in and ask how Jonah is, they are 8 and 10and have even had a prayer request for him at school. Keep the pictures and information coming, as we check on baby Jonah daily. Praying for peace, comfort and the Lords guidance over these Doctors who are treating your sweet boy!

Oh Patrice and Matt, He is PERFECTION! And to know that God has knitted him into your womb with extraordinary purpose and reason. Someday when he comes to know God you can tell him about his older brother who was here so briefly, but again with an amazing purpose and reason from his Father God. We all think that our children are stars, but Jonah is already a super nova!! I pray God's peace and joy on your family.Robin (TX)

Pictures look great. Just wanted to add some bottle suggestions you may or may not have tried yet. Since he likes the green paci so much, there is a bottle that goes with it. Its a First Years Soothie bottle. It wasn't out yet when I worked in the NICU so I don't have personal experience with it. We tried all the bottles you have mentioned with our son who was born 6 wks early with a cleft palate and the only one that worked for more than 10cc's was an avent bottle that we cut a very small slit (with suture scissors from the NICU) and that way we could control the flow depending on whether the slit was up/down or sideways.

Hi Patrica and Matt. I started reading your blog after the article posted in the WS Journal. You are two incredible people and have the sweetest little boy. I am a true believer in miracles, and the power of prayer. My son was born with a blood infection. He was in the NICU for 2 weeks, with the first week and a half not knowing if there would be a tomorrow with him. In that sense, I can relate to the pain your heart must feel. You are so strong for putting your story out there for the world to see. I am praying for you daily. As I was praying for Jonah tonight, all I could seem to get out was, Dear God, I pray for a miracle for Jonah, over and over again. I believe in my heart that God will provide a miracle, and that in every step of the way, He is glorified. I pray for strength for you and Matt. Thank you for letting the world in on the beauty of Jonah.

What a PRECIOUS baby boy!!!!! So glad to hear of the great day you guys have had!!!! Continuing to pray for Jonah and for you and Matt!!! Hoping for more good news tomorrow!!! I've been praying for "victories" no matter how small!!! God is good!!!

He is just so SWEET and CUTE!!!! I love the curls and the clean hair -- another blonde in the family too!! I am so thankful that today was a much better day and let's all pray that the pain management tonight was exactly what he needs. I love the photo of Matt - seeing his genuine joy being the proud daddy to such an amazing little boy - the mask definitely did not hide that big smile!! Prayers are going up for more steps forward, less steps back, and lots of peaceful awake time for the three of you together this weekend! Happy 2 week Birthday to JONAH!! Much Love, Tiffany

Somehow I stumbled across your blog lastnight, and I spent lastnight and this evening catching up on it. Jonah is the most adorable little guy, and what amazing, strong parents he has.Though we've never dealt with anything like this, we have had our time in the nicu. Our triplets were born at 26 weeks, and all got down to just over a pound at one point. Miracles do happen.I said a prayer for Jonah tonight, and I will check in on him every night and say another prayer, for him, and for you and your husband.

I have never met you, but I grew up in Winston- Salem as well and went to Mt. Tabor HS. I ran into your blog via your Facebook page for Jonah. I can't even imagine what you and your husband are going through but I want you to know that your story led me to my knees in prayer for your family. Remember our God is a Great God and he has you and your family in the palm of his hands!

Jonah has stole my heart. I pray for him and for you and Matt. God always knows what he's doing and giving Jonah to you and Matt is no exception (of course, HE IS GOD, right?). Today's pics are absolutely adorable! Jonah is beautiful. Thank you for sharing your story AND allowing us to be a part of your life. In Christ, Sandy of Stokes County

Love the blond hair, and the paci picture in the previous post... What a cutie!! He must feel a little fresher with his hair all clean. Still praying for you all, and especially for a miracle for Jonah. Thanks for all the updates, they really make it easier to know just what to pray for.

I have to ditto the previous post about the soothie paci bottle. When I worked NICU they werent out yet... BUT there is a possibility that if you find one ... he might love it. Sometimes, ok most times, even the sickest babies are particular when it comes to their nipples. I just wonder... if maybe a familiar comforting nipple shape may make a world of difference? Its totally worth a shot.

I am still praying. And FYI .. from a totally objective viewer? He looks SO much better, less swollen, less critical and just as precious as ever.

Awww, he looks like such a cute cuddly teddy bear in that last picture!I know it must seem so much different in person, but from these pictures to me it really looks like he has a mild form of EB. It just seems like so much worse because at this age babies are so curled and helpless. His natural response to anything is to curl up and squeeze, but that causes injury. In time, I know he will learn to work his body the way he needs to. Right now he is in the best hands and has a very good mommy to help him :)We're still praying!

I'm so in love with this little man! I haven't commented much, but have been following along since the beginning. Our little family has been praying for you, Jonah, Matt and Patrice. I've wept with you, I've rejoiced with you. I'm so glad God made us part of a body, to lift each other up and celebrate, too.

I find so much delight in seeing new pictures of him. And seriously, could he be any cuter? He is just a little dolly.

Wiliams Family,Jonah looks so comfortable - clean hair (always works for me) and new "jammies" to rest in. What a blessing you are to each other! May God continue to bless each day and hour for you. Happy Birthday, dear Jonah, and many, many more.Sandy Widener

Patrice, Baby Jonah (as my 4 year old calls him) is precious! We have been praying constantly for him and he remains on my heart through out the day. I praise God for how he takes care of his children and lets no detail slip by - I love that about him.As you begin doing exercises with him, I just want to encourage you. I had to do 8 months of OT with my now 15 month old including daily exercises that he hated and included lots of screaming and crying. I just kept telling myself it was for his good and he wouldn't remember these times (his daddy couldn't handle it and hated to hear him crying). It was worth it. I am praying that God gives you the daily/hourly/minute by minute strength you need to do what God has called you to do. By the grace of God you are doing an amazing job - how blessed Jonah is to have you & Matt. How blessed we are to witness God's power. Thank you .Tara in Oklahoma

That boy could not be more cute if he tried! I already love that kid so much, and our family prays for yours every night and often throughout the day. I'm giving you strict orders to call us without hesitation if you need anything.

I know you don't know me, but I found your blog and just wanted to you to know that you are in my prayers. I think about you guys often and pray with all my heart you get to take your beautiful baby boy home soon! He is such a gorgeous baby and a huge blessing! You are in my prayers! -debi

Oh my!!!! Seeing your gorgeous little man makes my day!, and would you just look at those lips!, this boy is going to put the Jolie-Pitt kids to shame! LOLOL! ....I am so in love with Jonah, and both of you! And its great that he takes his pacifier, he needs a little something to strengthen those little sucking muscles for when he gets the real thing - hubby and I are still praying every day for you all, and especially for his feeding that he will drink more of his feeds and get all of his nutrition and grow big and strong for you and Matt so you can take him home!!!! All our love to you all and hugs too from Perth,in Down Under OzJenny xoxoxoxoxox(extra kisses for Jonah xxxxxxxxooooooooo !)

Oh, his hair is adorable!:) I love it. I'm so glad his most recent dressing change went better. I'm glad they are finding ways to keep him more comfortable. I love the paci picture. So cute.:) I know the feeling you have had about not wanting him to associate you with feelings of pain and discomfort. Don't worry. I've learned with my little one, that she doesn't hold grudges.:) Even with all the yucky things I've had to do, I'm still her favorite.:)

Jonah's looking much better than even a week ago, especially his face. He *is* handsome, and all that curly blond hair is fabulous. It has been tough finding the right balance of care... but I believe all of you have managed well with the challenges in the past 2 weeks. Jonah's proving to be strong and brave. Hoping they find a cure, a bone marrow transplant is an option. Wishing for the best, that he will know life without pain.

Baby Jonah,I visited you yesterday, although you don't know me yet. I attend Pinedale church with your parents. I was in the hospital with another patient, and just took a quick trip to your floor. I would never interupt your parents, but I prayed over you from near the NICU ... I asked God to soothe you, and give you abundant comfort as He touches your body to help you heal. You are an amazing little boy, and God has a purpose and plan for you. Stay strong, and just know that there are thousands of prayer warriors taking you before God's throne - daily! You are absolutely adorable!Blessings,MaryKay Rath

He looks SO good today and his skin looks wonderful!! It must be that magical bath and clean hair. Clean hair makes us all feel like a million bucks. And he looks so strong and handsome. You guys are in my prayers.